Good Afternoon Lewy Warriors!

I hope this finds you well and that you've had a wonderful month. First and foremost, we wanted to thank all the members of our Advisory Board for all their help and input over the past month or two as we've sorted out the merchandise and solidified our plans for the future. We really appreciate all of your advice and input.

We are excited to announce that next week we will be launching our annual Holiday Fundraiser on Gofundme! Last year we raised $1,100.00 thanks to all of your help. This year the fundraiser will run from Nov. 1st until the start of January and we hope to beat our previous total. Please consider donating or sharing the link on your social feeds! Everything helps!

We're also starting to plan our next online, and possibly in person, art show for 2022. This time around we will have pieces available from multiple artists from across Canada and beyond. We had such a great reception to the first show, "Our Emotional Journey With LBD", that we can't wait to do it again!

In other news, you may have seen that we have finally launched our first piece of CLBDI merchandise. Check out a photo below of our spiffy new threads! We wanted to say thanks to Jeff Burton of the Sunnyside Foundation for putting us on to Lena and company at Imprint Anything. They did an amazing job with the shirts. We plan to expand our merchandise onwards in the coming months to offer more styles and even an online store. Very exciting! You can get a CLBDI shirt of your own by visiting the Community page and placing an order. You'll also be happy to know that $10 from every shirt goes to Dr. Pasternak's LBD research!

Thank you all for an amazing October and we wish you a Happy Halloween! See you next month!

Hello Lewy Warriors!

It's been a month already?! Well, we're happy to say that this month's update is full of wonderful news, so let's get right to it.

Firstly, our liaison at UWO, Ashely Irvine, has taken on a new role and will no longer be working with CLBDI. We wanted to thank her for all her hard work over the past two years. She has been nothing short of wonderful to work with and we wish her the best in her new position. She has been replaced by the wonderful Emily Grass, who will now be our contact at UWO. Her contact information has been added to the site and, as with Ashley, you can reach out to her directly to set up a donation at any time. But, with this change, comes an update to our current donation total system going forward. Our donation updates will now be coming twice a year, instead of quarterly, after this month's total. The first will come in January and the second will be arriving sometime in the summer of 2022.

With that being said, we wanted to let you know that, as of Monday, we are sitting at $23,872.00 in total donations! And here is some even better news... We've heard that another donation was made today that puts us either at or just under our goal of $25,000.00 for the year! Incredible. In the two years since we launched CLBDI, we've managed to come together as a community (through a pandemic, no less) and crush our goals. I am so proud to be a part of this project and want to thank everyone involved... whether you donated, commented, shared a post... anything! Thank you, thank you, thank you.

In other news, the CLBDI Advisory Board's official first meeting is tonight. We're so excited to have their input and advice take a more prominent role in our plans going forward. You can expect them to become more visible around here as we grow. We also love to hear from you... so don't hesitate to reach out via our contact form and let us know what you think.

This brings me to another important announcement... Earlier this month, we welcomed a new member, Natalie Leitzmann, to the Advisory Board. We are so grateful to have her input and 10+ years of experience with LBD with us going forward. We shared this on our Facebook page and made some updates to the "About Us" page on our website a few weeks back but we also know that many people don't use that platform and may have missed the announcement so we've added her story and a little about her below.

"My father immigrated from Germany in 1954. The only family member to come. He was 50 years my senior and I was the last of 3 children. When I was 22, my father began acting unlike himself and there were concerns that perhaps he had had a stroke. After a lengthy time in the psych ward in Grand River, the doctors misdiagnosed him as having a psychotic depression. You can imagine that after having a stint in that ward, my father was none too eager to check himself into Freeport Hospital for proper testing. This began in 2005 and I was unable to have him checked into Freeport until 2009. After about 2 weeks they gave him the diagnosis of LBD. At the entry-level of this disease, my father, Klaus, began acting "weird". Nothing seemed to work properly in his mind and everything was a conspiracy. He was not a "pill popper" and therefore getting him to take medication was very challenging. It was a blessing in the beginning because they attempted to give him antidepressants and as I am sure you are aware, those can do more harm than good in a patient with LBD. After the diagnosis, it was still a challenge to ensure he took his medication as he would remove it from his mouth if I wasn't watching. Ironically, in 2012, my father had a right-sided temporal stroke, survived, and his personality returned. He lived until 2016 (almost 84 years of age) and was quite intact until the end. He would remember conversations we had and often asked me two or three days later about what we had spoken about. He died of aspiration pneumonia. as the muscles had weakened in the end and food easily entered his lungs. I have lots to share about his journey and I would like for others to be more aware of the disease and the early symptoms to avoid the stress and confusion I went through. More empathy and community support are needed and I hope to share my story with others to make them feel less alone."

Again, welcome to the team Natalie. We're so pleased to have you with us.

Lastly, October is going to be a busy month here at CLBDI. We are going to be launching our second annual CLBDI Holiday Fundraiser mid-way through the month and will have merchandise ready and available for you soon. We hit a slight snag with some sponsorship and production issues and that put us behind but we are still aiming to have the pre-order up in the next couple weeks and shirts available by the end of the month.

We hope you've had a wonderful September and are looking forward to the fall as much as we are.
​
Best,
Joe

Hello Lewy Warriors!

Wow! Can you believe it? August is coming to a close and it's already time for another monthly update!

Today we wanted to take a moment and share a few amazing updates but, first and foremost, we wanted to say that we hope that each and every one of you have had a wonderful summer. We'll be taking a bit of a break from Monday, August 30th to Tuesday, September 7th to unwind and enjoy the last week of summer. During this time, we may be slow to respond to emails, messages and comments but as soon as we are back, we will have tons of stuff to share.

We're overjoyed to announce that our first run of merchandise is going to be dropping in October, around or just before Thanksgiving, and we're hoping to have two designs available for you to purchase from the jump. Pre-orders and final pricing will be going live in the first week or two of September along with some news about our first sponsor and some changes to the site. As previously stated, a percentage of money earned from every sale will be pooled and donated to Dr. Pasternak's team with the total from our Holiday Fundraiser at the end of the year. You can check out three of our upcoming designs at the bottom of this blog post. We have more in the works and have been super busy. I know that we're running a tad behind with the merchandise release but we want to make sure we're offering the best quality product and to make sure that everything goes smoothly as CLBDI expands. Let us know which one you're interested in!

We will also be sharing our new donation total sometime mid-September and starting the roll out for our fall and winter events. We're happy to share that we've sold another piece from our "Our Emotional Journey With LBD" since our last blog post as well! We know that we have taken a few months off from fundraising so we don't expect the total donation number to  change that much but we are excited to see what's changed and where we stand going forward nonetheless. We're still so thankful and proud of our community.

Also, if you're in the KW and London region, keep your eye out for our new brochures! We've sent a bunch out to some of our associates and friends. We hope to get more out into the community as we move into the fall and winter. If you are a business owner/medical practice and would like to have some for your workplace (or would just like some literature yourself), shoot us an email through our contact form on the home page.

Well... It's been a relaxing and fulfilling summer for all of us but we can't wait to get back at it full time. Lots more cool stuff is coming in September and October but we can't quite spill the beans yet. Just be sure to keep checking back and follow us on Facebook for regular updates.

All the best,
Joe

Good Afternoon Lewy Warriors,

We're here with another monthly update! Firstly, we want to wish you all a great August and we hope that you've had a wonderful summer so far. Remember to take time for yourself and slow down to enjoy the sunshine.

Our yearly deposit from Bob's LBD Trust Fund has gone through and as of last week we are sitting at a new total of $22,241.00 in total donations. We are so proud to have raised this money for Dr. Pasternak's LBD research but we couldn't have done it without you! So we wanted to say a huge THANK YOU to everyone who has been involved so far. We hope that with our fall and holiday fundraising, we can surpass $25,000.00 in total donations by the end of the year. We are still taking a break from fundraising to plan out the rest of the year but we can finally share some of our ideas with you!

Firstly, we're finally getting some CLBDI merchandise! I know that I had previously mentioned this in the May blog but we're actually in the final stages of the process now and will be able to share more information with you in the coming weeks. As of right now, we expect to begin taking orders for our first run of shirts in late August or September. We're very excited that to be able to offer some spiffy new threads and more support to Dr. Pasternak's LBD research. The advisory board members are currently narrowing down our options and picking the final designs. We need a little longer to finalize our choices and put the order in but they will be available very very soon. A portion of the funds raised from shirts and other merchandise will be donated to Dr. Pasternak and his team so you can feel good about your purchase! They make great birthday and holiday gifts too!

​We are also currently looking at doing more community outreach and getting involved in the local media. If you know someone who might want to write about what we are doing, please have them reach out to us through our contact page! As we keep growing and hitting our fundraising goals, we feel like it's finally time to step out in to the light a bit more. We would love to share our story with whoever will listen.

We have plans for at least one or two more online fundraisers before the end of the year and, as the summer comes to an end, we will begin finalizing our plans and sharing more information. We had hoped that we can hold some in-person events but with the Delta variant lurking, we are being as cautious as ever and really weighing our options. The safety of our community and team comes first and foremost. So, no news about live events yet. With that being said, you can expect a lot of noise from us as we move in to the fall.

And, as always, please consider getting the vaccine against covid-19 if you haven't already. Most places are offering walk-ins now and the more of us who are fully vaccinated, the safer we will be as the cold weather comes around.

That's all from us this month. See you in August!

Cheers,
​Joe

Hello Lewy Warriors!

We're doing the June update a bit early this month due to some previous plans next week. We're so happy to announce that we've surpassed our second donation goal... we've raised $20,861!!! WOW. That's not even the final quarterly amount either, as the deposit from Bob's Trust has yet to be included. We will post an amendment to the total next week when we have the final numbers.

We can't believe that we've already reached our year end goal. We couldn't do it without the help and support of our community. I know I sound like a broken record but it is amazing that we have been able to raise that much in less than two years. The money, as you know, goes directly to Dr. Pasternak and his team's research into Lewy Body Dementia. We're hoping that we will be able to share more information soon regarding what he has actually been doing but the pandemic has, as always, muddled up our plans.

If you follow our Facebook, you would have seen that we unfortunately suffered some technical difficulties this month so we are running a bit behind with everything but we have tons of stuff planned for July and August. Very soon you will be able to browse the amazing merchandise we've been designing and, hopefully, we will be able to share some actual dates with you for in-person events in the fall.

It's been an amazing year so far and we can't wait to see what happens next. Thank you again.

And just a reminder to everyone, the more vaccines that are administered, the closer we are to getting back to normal. If you need information on vaccines or want to book yours, check out the Region of Waterloo website. Click here to learn more.

Have a great weekend.

​Joe

Good afternoon Lewy Warriors!

It's time for our May update! Can you believe how fast time is flying by?! We hope you have all been keeping well, safe and balanced. Firstly, we wanted to update you all on the total funds raised by the events we ran in the Spring. The new total, $3,525.00 + $1,100.00 (the total from the CLBDI Spring Fundraiser) puts us at a total of $4,625.00. Wow... Amazing stuff from our amazing community. Thank you, thank you, and thank you again. The CLBDI Spring Fundraiser is closing after this post goes live and the money raised will be donated later this week.

As we said in our April post, we will not be doing any more fundraising until the Fall... but we are hard at work putting together new graphics, LBD content and merchandise for you to enjoy. Of course, a percentage of sales from the CLBDI merchandise will go to Dr. Pasternak and his team. We can't wait to show you what we've been working on. We are also nearing our $20,000.00 goal and looking to get ourselves out into the community in a more visible way. If you know anyone who would be interested in speaking with us in the press or online, do not hesitate to reach out to us through our contact form.

With the pandemic's end in sight, we also are beginning to (cautiously) think about and plan our return to in person events. This would not be happening until the Fall but we are so excited to get back out there and see all of you wonderful people and meet some new friends as well. More information will be available as things progress but it is so great to be able to even think about in-person events again. A huge thank you and shout out to all the frontline and medical workers that have helped us weather this storm. If you haven't yet looked into vaccines in the region, please check out this site for more information. Every vaccine shot administered is another step closer to the end of this pandemic. We're so close now... please do your part to keep yourself and your loved ones safe.

We also wanted to use this month's blog post to cover a topic that we haven’t yet and feel that we should be talking about… The neurological phenomenon known as “sundowning”. You might have heard it before, but many may not know the details. So, what is “sundowning”? And how can you, as a caretaker or care partner, help your Loved One who is suffering from it? We’ve put together some information and resources for you here. You will also find this and other information added to our LBD Resources page as of today.

So let’s get to it…

Wikipedia states that “Sundowning, or sundown syndrome is a neurological phenomenon associated with increased confusion and restlessness in patients with delirium or some form of dementia. Most commonly associated with Alzheimer's disease, but also found in those with other forms of dementia, the term "sundowning" was coined due to the timing of the patient's confusion. For patients with sundowning syndrome, a multitude of behavioural problems begin to occur in the evening or while the sun is setting. Sundowning seems to occur more frequently during the middle stages of Alzheimer's disease and mixed dementia. Patients are generally able to understand that this behavioural pattern is abnormal. Sundowning seems to subside with the progression of a patient's dementia. Research shows that 20–45% of Alzheimer's patients will experience some sort of sundowning confusion.” (https://en.wikipedia.org/wiki/Sundowning)

​Furthermore, “The term "sundowning" refers to a state of confusion occurring in the late afternoon and spanning into the night. Sundowning can cause a variety of behaviours, such as confusion, anxiety, aggression or ignoring directions. Sundowning can also lead to pacing or wandering. Sundowning isn't a disease, but a group of symptoms that occur at a specific time of the day that may affect people with dementia, such as Alzheimer's disease. The exact cause of this behaviour is unknown.” - Dr. Jonathan Graff-Redford, M.D., The Mayo Clinic (https://mayocl.in/34u2yy7)

The article by Dr. Graff-Redford also share this list of further information regarding factors and tips related to “sundowning”:

Factors that may aggravate late-day confusion include:

• Fatigue
• Low lighting
• Increased shadows
• Disruption of the body's "internal clock"
• Difficulty separating reality from dreams
• Presence of an infection such as urinary tract infection

Tips for reducing sundowning:

• Try to maintain a predictable routine for bedtime, waking, meals and activities.
• Plan for activities and exposure to light during the day to encourage nighttime sleepiness.
• Limit daytime napping.
• Limit caffeine and sugar to morning hours.
• Keep a night light on to reduce agitation that occurs when surroundings are dark or unfamiliar.
• In the evening, try to reduce background noise and stimulating activities, including TV viewing, which can sometimes be upsetting.
• In a strange or unfamiliar setting, bring familiar items — such as photographs — to create a more relaxed, familiar setting.
• Play familiar gentle music in the evening or relaxing sounds of nature, such as the sound of waves.
• Talk with your loved one's doctor if you suspect that an underlying condition, such as a urinary tract infection or sleep apnea, might be worsening sundowning behaviour, especially if sundowning develops quickly.

Here are some more links to “Sundowning” information and tips:

“SUNDOWNING: WHAT IT IS AND HOW YOU CAN HELP” (https://lewybodyresourcecenter.org/sundowning-what-it-is-and-how-you-can-help/) - Norma Loeb, The Lewy Body Resource Center

“Tips For Coping With Sundowning” (https://www.nia.nih.gov/health/tips-coping-sundowning) - The National Institute Of Aging
​
“Caregiver Training: Sundowning” Video (https://www.youtube.com/watch?v=kskiEKghjAE&ab_channel=UCLAHealth) - UCLA Alzheimer’s and Dementia Care Program

Good afternoon Lewy Warriors!

Well, it's the end of another month and that means it's time for another update! First and foremost, we wanted to say thank you to everyone who visited our first online art show, "Our Emotional Journey With Lewy Body Dementia". It was an incredible turnout and we've read all of your lovely comments and reviews. Thank you all so very much for making this such a successful event. As of today, we've raised a total of $3,525.00 for LBD research and sold 10 of the 15 pieces that our founder, Carol, was showing. On top of that, we've raised another $800.00 through our Spring Fundraiser. That puts the total amount raised at $4,325.00 raised since March. Wow. We are so proud and humbled by the generosity of our community. That means that our donation total is sitting around $17,306.00 (possibly more) at the time this is being posted. Can you believe we are almost at $20,000 raised through donations?! Incredible.

The CLBDI Online Gallery space will be closing down tomorrow and a post-show review and summary will be added to our "Community" page. The Gofundme for our Spring Fundraiser will remain open until the end of the month and will close early June. Hopefully we can surpass our previous fundraiser's total. If you are not in a situation where you're able to donate, don't worry! There are so many other ways to get involved! Leave a comment, share a post, or consider sharing the Gofundme page around to friends and family directly... a simple message can help spread awareness about what we're doing and is greatly appreciated by everyone here at CLBDI.

Direct link to our Spring Fundraiser.

May will continue be a bit of a quiet period here as we put together our summer plans and hopefully get to finishing more original CLBDI content. We've been in touch with other great LBD groups across the globe and, hopefully, we will be doing some collaborations together in the near future. Plus, we have all sorts of CLBDI goodies that we hope to have available to everyone soon. During this down period, we will also be doing some updates to the site and, as always, regularly adding to our resource lists. Thank you again for all your generosity and support. We couldn't do this without the wonderful members of our community.

I wanted to mention that we have recently updated the donations page and added more ways that you can donate directly to Dr. Pasternak and his team. Giving different avenues for direct donations makes it easier than ever to donate to LBD research on your own terms. We also wanted to take a moment to say thanks to Ashley, our liaison with UWO, for always being so helpful and making sure we have all the information necessary to run this smoothly. We appreciate all your hard work.

Lastly, Carol had the chance to write an article for the Retired Teachers Of Ontario's latest newsletter. The theme of this edition was "Changes, Challenges, and Choices" and Carol held nothing back in writing about the changes and hardships that come with an LBD diagnosis. We've included it in this blog post, so check it out when you have a chance.

All the best,
Joe

Good afternoon Lewy Warriors!

I wanted to pop in before the end of the month and give you an update on everything that is going on here at CLBDI. As previously mentioned, we have surpassed our original $10k donation goal and are as of now just shy of $13k. Our current donation total is $12,981! Wow! Thank you all so much for your generosity. We are creating positive change as a community and to us that is just incredible. We are so proud of everything we have done together and thankful for every single one of you. We have received word that some of the money has already been put to use by Dr. Pasternak and his team in the research lab and hope to be able to tell you more about it soon.

With the $350 raised so far through our Spring Fundraiser and the funds raised from the sales of three paintings from the "Our Emotional Journey..." digital art show, we are actually sitting closer to $14k but those donations won't be counted until the end of next quarter. Hopefully by then, we will have raised even more for LBD research and by the end of the year we will have reached our next major donation goal.

Speaking of the Spring Fundraiser... it will still be live and open to donations for another month and a half so please consider sharing it around to your friends and family. We'd love to beat our Holiday Fundraiser total and set a new record! You can check it out on our "Community" page or by clicking this direct link - gf.me/u/zm5m8s.

Our online art show will also continue to run for a few weeks so please stop by, enjoy the artwork and leave a comment. We would love to hear from you!

Visit the online gallery.

As for next month? Well, April is going to be a bit of a quiet month here at CLBDI. March has been so busy that we need a bit of time to decompress, work on some new original content for you and get to planning our summer events. We will still be posting regularly on our Facebook page and updating the website but there will be no new events announced until closer to the end of June.

We hope you all have a lovely Easter weekend and wish you all the best for the coming month.

Thank you again for being a part of this journey with us. We couldn't do it without you.

Best,
Joe

Hello Lewy Warriors,

We wanted to let you all know that our digital art show, "Our Emotional Journey With Lewy Body Dementia" by H. Carol Schmidt, is now live. You can visit the gallery by clicking the "Visit Gallery" button on our Community page (just below the art show poster) or through this direct link:

The CLBDI Online Gallery and Event Space

We hope you will take some time to check out the pieces and share it with your friends and family. There is a place to leave comments and a link to our Spring Fundraiser for LBD research that went live last week. It will run for a few months so there is plenty of time to get the word out and beat our previous fundraising total.

You can visit the Spring Fundraiser directly on Gofundme by clicking this link:

gf.me/u/zm5m8s

We will be posting one more blog before the end of the month with some donation information, spring plans and our new donation total so keep checking back for that.

Have a great weekend everyone.

Best,
​Joe

Hello Lewy Warriors,

We're happy to announce that our digital art show and fundraiser, "Our Emotional Journey With Lewy Body Dementia", opens on Friday, March 26th here on our website. Mark it on your calendars and be sure to come and check it out! All proceeds are going to Dr. Pasternak's LBD research at UWO!

​Joe